Losing a Hero to Alzheimer's: The Story of Pearl (an excerpt)

VATIC Expressions

Truth, Transparency, Transformation

Volume IV, Spring 2018 Issue

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After graduation, Trish moved back home to start her career. It appeared that the notes and memos posted around the house had grown more intense. The amount of notes had tripled in size. Pearl's memory was getting worse. She appeared more and more disorganized, moody and withdrawn. She needed assistance with managing her finances but was in denial. Pearl (her mom) was now entering into what Trish thought was Stage 4 of Alzheimer’s. She was experiencing a moderate cognitive decline. During this stage, Pearl’s bad days started to outweigh her good days.

Sometimes when Trish and Pearl were out, she would run into old acquaintances. Pearl would suggest to them that they get together for lunch or dinner. This bothered Trish so much because she felt her mom was giving people false hope. Looking back, Trish didn’t know why she allowed it to bother her so much. After all, the people who she was saying that to probably didn’t give it much thought. They were probably agreeing just to be nice.  Also, during this stage of Alzheimer’s, if a person really didn’t know Pearl that well they wouldn’t know that anything was wrong. Pearl’s behaviors got more and more bizarre as time went on.

Pearl and her second oldest child, Billie Jean, rode the CTA bus wearing big silly character hats (i.e., Dr. Seuss) and carrying teddy bears in their arms on public transportation. They were amused that people found them weird. Trish was furious about the whole idea, and hoped no one she knew ran into her mom and sister. Pearl and Billie Jean stated they enjoyed watching people’s reaction. Although Billie Jean wasn’t officially diagnosed with a mental illness, Trish knew that her behavior wasn’t normal. She was extremely bright and intelligent, but was inflicted with societal issues that altered her behavior. Billie Jean's decision-making skills and judgment caused Trish to question her cognitive skills. She danced to the music and drums that only played in her head.

Pearl started having problems with her knees and couldn’t do all of the walking that she use to do. The doctor recommended surgery on her left knee. She was off work for an extended period of time, but eventually returned to her job. Pearl had been at her job for over 15 years as an Office Manager. She had a lot of tedious tasks to remember and perform. One day, Pearl’s friend from her job called and asked if the family had noticed anything different about her. She began to explain how Pearl was forgetting to complete tasks at work, and it became very noticeable to others at the workplace. Consequently, Pearl started to share with Trish that she didn’t like her boss, and that she felt that her boss was out to get her. That was totally out of character for Pearl. She had always spoken very highly about her supervisor. As time went on, Pearl became more and more forgetful. She started to have difficulty remembering what she did from week- to- week and then day- to- day. When this was brought to her attention, she would get mad and become very defensive.

Pearl’s arguments with her husband, Jesse, grew more intense because she was losing her cognitive ability. It became even more difficult for her to explain her reasoning for certain financial decisions she made in the past. She wasn’t capable of defending herself against Jesse. This really concerned Trish. Jesse would get more and angry. He started to feel as if he was being deceived! The truth of the matter is, Pearl kept a lot of information from him during their marriage because of his lack of knowledge in running a household. He was extremely difficult to deal with and unreasonable. Pearl would always say, “The house would cave in if it weren’t for me.”

As time went on, Pearl started having problems with her right knee and had to have surgery. She went on short term disability from work, which eventually turned into long term disability. Pearl never returned to her job after the second knee surgery. Trish was so grateful that her employer allowed her mom to bow out gracefully. The more time Pearl spent at home, the worse the Alzheimer’s got. A lot of this had to do with the fact that she was out of her daily routine. Surely, the arguing and interrogation by Jesse didn’t help her mental state, either. Jesse and the older children were all in denial. Trish was the only one who acknowledged that something was wrong with her mom. Her awareness and acceptance came from her working in the behavioral health care field, and being around residents with Alzheimer's.

Trish recognized that her mother’s illness was progressing, so she started taking Pearl out of town to visit relatives that she had close relationships with over the years. Jesse was very upset because he didn’t want her to go for his own controlling reasons. He also knew that relatives resented the way he treated his wife. Pearl went to California to visit Jesse’s family who adored her. Later she went to North Carolina to a retirement party for her sister-in-law, and had a wonderful time. Pearl adored her sister-in-law, and she rose to the occasion by pretending she knew everyone in attendance.

While living at home, Trish started to do other things her mother wanted her to do because she verbalized she did not trust Jesse. Trish started to handle her mother’s personal affairs, and help her make sound decisions. Pearl started to openly express her disdain for her husband. She made it very clear to Trish that if she ever got to the point that she was really sick and she wasn’t able to make decisions for herself, she didn’t want her husband to make any decisions on her behalf. Pearl went to great lengths legally to ensure her husband wouldn’t be able to make any decisions about her life. She appointed Trish power of attorney of health care to ensure her husband wouldn’t be able to make any decisions about her care. Pearl expressed to Trish one day that she wouldn’t be surprised if Jesse tried to kill her.

© 2015 Patricia M. McClure

Patricia McClure-Chessier is an award-winning author, and her book Losing a Hero to Alzheimer's: The Story of Pearl is available for sale at Amazon.com, BarnesandNoble.com, and WestBowPress.com. 

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